Like a doctor taking a patient’s pulse, public health scientists read their communities’ vital signs every day to help people stay healthy. They analyze trillions of bytes of data from health care providers to track diseases, identify outbreak hot spots, and direct services to where they are needed most.
The federal government is working to help state public health agencies get more detailed and accurate data more quickly to better protect communities from disease, but each jurisdiction has its own policies, budget, workforce, and technological infrastructure—not to mention its own communities with their own health priorities.
To better understand these differences and commonalities, The Pew Charitable Trusts examined laws and regulations related to public health data in each of the 50 states and the District of Columbia from May to August 2021, and then interviewed more than 260 officials in 48 jurisdictions from October 2022 to April 2023 about how they implement these policies.
The subsequent report, “State Public Health Data Reporting Policies and Practices Vary Widely,” identifies opportunities to improve data from case reports, lab reports, syndromic surveillance (an early-warning system that uses reports of symptoms and syndromes primarily from emergency departments), and immunization reports.
The following takeaways are most relevant to federal policymakers.
Electronic case reporting needs attention. Tens of thousands of hospitals use digital systems to automate reporting for COVID-19, but fax and phone are still the most widely used technologies for reporting cases of other diseases. Public health officials in many jurisdictions said cases are underreported overall.
Through real-time exchange of information, electronic case reporting (eCR) reduces the burden of reporting on health care providers and improves data quality, but providers and state public health agencies need more federal support to adopt these systems. Officials from about half of the states interviewed for the report said that they do not incorporate eCR data into their surveillance systems, compared with one-third who said they did. Several said their surveillance systems were simply not technologically capable of receiving and processing eCR data. And when asked what barriers stood in the way of more widespread adoption of eCR, most officials often cited a fundamental lack of resources, namely funding and staffing. The Centers for Disease Control and Prevention has committed $255 million in grants to help state and local health departments modernize their data infrastructure, but after a boom in pandemic-era spending, the bust end of the funding cycle threatens long-term progress.
Incentives work. When asked what features improved reporting among providers the most, officials cited incentives, particularly Medicare’s Promoting Interoperability Program and Merit-based Incentive Payment System. These programs increase reimbursements for hospitals and physicians, respectively, that report public health data using certified electronic health records (EHRs). To drive wider use of eCR, Pew encourages the Centers for Medicare & Medicaid Services (CMS) to incentivize health care providers to use eCR for reporting a wider range of priority health conditions and to improve data quality.
Sliding-scale incentives could help under-resourced providers improve data. Officials interviewed for the report expressed concern that some health care providers, particularly those that serve low-income and rural communities, do not have the financial or technological capacity to adopt eCR and other automated electronic reporting systems. If Medicare rewards only the health care providers that report case data using eCR, then the agency is probably missing opportunities to encourage under-resourced providers to incrementally improve reporting. Pew recommends targeted incentives to help under-resourced providers move toward eCR without immediately requiring them to invest beyond their means in expensive EHRs.
More demographic data is needed to identify and reduce health disparities. CMS’ top health equity priority is to “expand the collection, reporting, and analysis of standardized data.” Indeed, to eliminate health disparities, the first thing that public health agencies must do is to identify them—and for that they need data. Pew’s research found that in policy and practice, race and ethnicity data is more often required and included in case and lab reports but less often for immunization and syndromic surveillance data. Through CMS’ reimbursement incentives and federal health IT accreditation requirements, the agencies should continue to encourage and enable providers to more regularly include race and ethnicity in their reports.
Syndromic surveillance could benefit from more urgent care data. Emergency departments widely participate in syndromic surveillance, but urgent care centers do not—even though they are increasingly treating patients with acute health issues. At the time of these interviews, only one state reported receiving syndromic surveillance data from 75% or more of the available urgent cares. Several jurisdictions reported receiving limited urgent care data. Some officials also said that cost may be a barrier to getting small and independent urgent care clinics to connect with syndromic surveillance systems.
Without more participation from urgent care centers, public health officials are missing a significant source of early-warning data. Pew recommends that CMS expand its Merit-based Incentive Payment System to incentivize physicians working in facilities other than emergency departments, including urgent care centers, to participate in syndromic surveillance.
State and local input is vital for the Data Modernization Initiative. Having accurate, complete, and fast exchange of information across thousands of state, Tribal, local, and territorial borders, is necessary to quickly detect, prevent, and treat diseases. That’s why CDC’s Data Modernization Initiative is so valuable: It provides agencies with a blueprint to modernize data collaboratively—and money to help implement it. Federal agencies should continue to engage states to ensure that this initiative and related efforts minimize the patchwork nature of public health policy.
Kathy Talkington directs The Pew Charitable Trusts’ work on public health issues.